Annie is doing well. Thankfully, this week has not been nearly as exciting as the last. She is finally making progress- slower than I would like, but at least it's progress. Over the last few days, the doctors and nurses have removed two femoral lines, two chest tubes and her foley catheter. She is starting to be weaned from some of the many medications she is on and they are starting to feed her a very small amount of food again (currently, a half teaspoon an hour). She is VERY slowly starting to lose some of the extra fluid that is in her tissues. The main goals for the upcoming week (besides getting rid of more fluid) are: 1) to get her atrial lines out of her heart as they pose the biggest infection/ thrombosis risk; and 2) to begin to wean her from the ventilator. Once the lines are out of her heart and the last two chest tubes are removed, I will finally be able to hold her some (depending on how willing her nurse is to bend the rules). I can hardly wait! The more awake and alert she gets, the more anxious I get to hold her again. It is frustrating to only be able to rub her head or touch whichever foot or hand is not currently occupied with an IV and all of the accompanying gauze and tape. I can't help but feel like she is missing out on so much. By the time we bring her home again, she will no longer be a newborn. Babies are supposed to spend the first few months of life wrapped up snug, sleeping, eating, and growing. Annie is unable to do any of these things (except sleep when she has enough pain medicine on board) and is instead recovering from major open heart surgery. I feel so sorry for all that she is going through and just hope that we can make up for the lost time as she heals.
As some of the bandages have come off of Annie's chest this week, I have been able to get a really good look at the incision running down her mid-line and the sutures holding it together, as well as the several small holes in her chest where central lines and drainage tubes have been placed. Just two weeks ago, she had that beautiful flawless skin that all babies come with. You would never have guessed by looking at her that she had such serious problems with her heart. She now has these scars that she will carry with her for the rest of her life. I know it's trivial when looking at the big picture, but a part of me feels sadness, even for this. In this small way, she will never be the same again. Of course, I know that these scars are the result of her life being saved. Would I trade them for her perfect baby skin to be restored? Obviously, I would not. I am so grateful for the skill of the surgeon; grateful that something could be done to preserve the life of my baby daughter; grateful that I have her here with me now. It is so interesting to me that while I feel some sadness for her scars, I feel deep gratitude for them as well.
We found out that Annie had heart defects on a Wednesday morning. Friday night, I spent most of the night on the couch because I could not stop crying and I did not want Cameron to wake up. After a very long night and just a few hours of sleep, I woke up Saturday morning and really knew for the first time since receiving the news that I was never going to be the same again. I had to accept that this was going to be one of those experiences that would change me forever. I realized that morning, that while I could not choose how things would turn out for my baby, I did have some ability to choose how things would turn out for me. I could let this experience make me angry and bitter and spend the rest of my life feeling cheated, or I could exercise my faith and grow from the experience. I could let this be an opportunity for my testimony to be strengthened, or I could let it fade in the sadness I was feeling. I could focus on the terrible moments and choose to never see the sweet ones, or I could count my blessings, even on extremely difficult days. This was the first of two goals I made that morning (I will write about the other goal another day): to come through this with my faith, my optimism, my testimony and my trust in God intact; to not be bitter and angry, no matter the outcome. Obviously, this is a very long term goal as we will deal with Annie's heart defects for her entire life. I am finding that some days it is easier to do this than others. I know that, just like Annie, I will always carry some scars from this battle for her life. The bottom line is that neither one of us will ever be the same. I am praying, that even on sad and bitter days, we will always leave room for optimism, gratitude and growth.